Barry, living with long COVID and caring for his partner with ME/CFS
Two years ago, Barry cared for his son who contracted COVID at school. Soon after he too became unwell. He tested positive for COVID and was admitted to hospital. It was then that his life started to unravel. He considers himself one of the lucky ones, and here’s his story including the many difficult experiences he’s encountered through his long COVID journey – particularly not being believed. Barry’s greatest support through his journey has been his partner, who lives herself with ME/CFS. It was her lived experience that led Barry to medical expertise that allowed him the vital keys to early diagnosis and effective treatment, leading to the lucky outcomes he is enjoying today.
My life’s changed – a small thing for example, I just couldn’t work out how to use the supermarket self-service check out. I just couldn’t do it – but now with time passing – I can do it but I still remain apprehensive. I would lose track of conversations – I couldn’t follow a conversation – I received jumbled messages and got confused. The fatigue and fog was too much, I could feel it coming on – I needed to catch myself and re-energise to be able to cope. I needed to stop and pause, and then I could refocus on the task.
I was fortunate, I worked casually and so wasn’t forced into a nine to five job. I also had generous and understanding clients – so was able to be flexible. There was drama though, because I hadn’t applied for leave in advance of my illness, so I didn’t get assistance from the government, I understand that’s been changed now. Today, I’m quite lucky – I’m able to work almost every day and I can live a good life.
My message to those who have unrelenting ME/CFS and long COVID, is to respect the process. For some it will be short, for others it will be a long process. The biggest thing is to understand yourself, its only when you know your own limits, that you can push your limits
We are delighted to share Emerge Australia Ambassador Bloom with her rendition of John Lennon’s Imagine to open and close our podcasts.
